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Thursday, 13 June, 2002, 11:02 GMT 12:02 UK
Outrage over blindness guidelines
The treatment is not available in many parts of the UK
Patients who are going blind may have to lose their sight in one eye before receiving treatment on the NHS, under proposals put forward by a government watchdog.

The National Institute for Clinical Excellence has recommended that only patients who suffer from age-related macular degeneration (AMD) in both eyes should receive treatment.

But it has also suggested that patients should only receive photodynamic therapy in the eye that has suffered the least damage meaning that they will lose the sight in the other eye.


This recommendation is outrageous

Steve Winyard, AMD Alliance UK chairman
The decision, which is open to appeal, has caused outrage among patients, doctors and charities.

AMD is the leading cause of blindness in the UK. In the classic form of "wet" AMD, blood vessels grow beneath the retina and may leak fluid and blood, leading to scar formation that may cause permanent damage and blindness.

An estimated 5,000 to 7,500 new cases of retina damage caused this way are thought to occur in England and Wales each year in people over 50 years of age.

Effective treatment

The condition can be treated with PDT. Without treatment, AMD can lead to loss of sight in an affected eye in as little as three months.

PDT uses drugs that are activated by light. Marketed as Visudyne, it is the first effective drug treatment for AMD.

It is routinely available in most European countries and North America.

Anne-toni Rodgers
Ms Rodgers said the decision was not final
However, access to the treatment in the UK is patchy with some health authorities refusing to pay for it because of the high cost.

Anne-Toni Rodgers, of NICE, said the organisation would listen carefully to any submissions against its decision.

"We are genuinely seeking the views of consultees during the appeal process and will consider carefully any points they make to us.

"This document may change as a result of the appeal process."

But she added: "If it does not change it would result in thousands of NHS patients who are currently being denied this treatment being provided with access to photodynamic therapy through specialist centres, at a cost to the NHS of between 4m and 8m."

Outrage

However, charities are united in their condemnation and have pledged to challenge the decision.

Steve Winyard, chairman of AMD Alliance UK and head of policy at the Royal National Institute of the Blind said: "This recommendation is outrageous.


We would advocate the use of PDT in all patients

Royal College of Ophthalmologists
"If upheld NICE is burdening doctors with the task of telling up to 1,500 people every year that they cannot receive treatment, despite there being an effective therapy available."

Robin Hill, of the Macular Disease Society, said: "Patients whose circumstances compel them to rely on the NHS will be condemned by NICE to Russian roulette for their one good eye.

"An accident or a sudden haemorrhage, or failure to get a clinic appointment within a matter of days, may take away at a stroke life's quality as they know it, something we who are fully sighted take for granted."

Anita Lightstone, head of the RNIB's Low Vision and Prevention team, said: "This form of rationing is fundamentally wrong. First eye blindness has a major impact on quality of life.

"We are being asked to accept a standard of care that is lower than any other country in Europe."

The Macular Disease Society accused NICE of basing its decisions on "Alice in Wonderland" economics.

Mr Paul Hunter, president of the Royal College of Ophthalmologists, said: "We would advocate the use of PDT in all patients where there is evidence that it is indicated and effective regardless as to whether it is one or both eyes that is involved."

 WATCH/LISTEN
 ON THIS STORY
The BBC's Navdip Dhariwal
"Doctors believe this is the first effective drug treatment"
Steve Winyard, RNIB
"This is a treatment that works"
See also:

13 Jun 02 | Health
12 Oct 01 | Health
12 Apr 02 | Health
28 Nov 01 | Health
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